Founder’s Message - The Good News Is That People Care Deeply About Our Children

Dear Friends,

People often express discontent with the media over the abundance of bad news they deliver daily.

It’s true that war, famine, crime and greed dominate the screens and speakers on all of our electronic gadgets, but there is also good news to be shared.

We’ve been collecting stories for H.A.L.O. Reports for 18 years now and have uncovered a profusion of positive, uplifting news in the community affected by severe neurological impairment.

We share these stories of dedicated families, volunteers and caring professionals to comfort and inspire and move you to action. 

Only with the help of a compassionate army of supporters can we continue to enhance the quality of life for these children. 

Thank you for your continued kindnesses.

Sincerely,

H.A.L.O. Makes A “Huge” Difference

The Nightingale Family enjoys time together at a recent road race.

Even though Eric Nightingale can’t walk or talk due to severe neurological impairment following premature birth, he skis, skates, “runs” road races, and is training for a mini-triathlon in partnership with his Dad.

His family says his ability to participate in these activities has increased his alertness and body stability, and enabled him to be accepted as “one of the kids.”

The H.A.L.O. Foundation’s assistance in building a recreational wheelchair and providing a motor lift in their home has been instrumental in improving his son’s quality of life, says Jerry Nightingale.

About three years ago the Nightingales had the opportunity to meet Rick and Dick Hoyt, a father who pushes his adult son’s wheelchair in the Boston Marathon and other runs to raise money for charities. Inspired by their closeness, Jerry, a recreational athlete, began to push Eric in local events using a hand-me-down jogger (stroller).

Eric responded enthusiastically, but when he outgrew the jogger -- he is now 12 years old and weighs 90 pounds -- the family discovered that a custom recreational wheelchair could cost $20,000 or more. H.A.L.O. matched funds raised by the Nightingales and other sources to allow Jerry to purchase parts and rebuild a used chair.

The “new” chair has disc brakes, multiple cross sections, cushions, and an articulated back to make it flexible, according to Jerry. Its exceptional lightness has enabled him to take Eric mountain biking over rough terrain and play on baseball and basketball teams for children with disabilities.

Eric goes skating with the bike H.A.L.O. funded.

“It’s made a huge difference for our son to have access to “normal” activities,” Jerry said. “I work from home Tuesdays and have been able to help him participate in his middle school running club. They added a wheelchair class for Eric and this opened the door for other students, too.”

“The biggest piece of this is . . . the individuals who work with him at school say Eric has grown tremendously this year. . . He has developed physically, improved his ability to scan with his eyes and hold up his [body] and is constantly looking around,” said Jerry. “He’s very interactive and uses his fingers to communicate yes and no.”

Since the intensity of running is the only thing that changed in the past year, Jerry said they all credit the activity for Eric’s improved ability to focus. Jerry concedes that he and Eric’s Mom, Elizabeth, have had to overcome fears about possible injury “but the benefits are so great, we will challenge him as much as he can tolerate.”

Jerry says Eric’s visibility in their Eastern Massachusetts town “has changed community culture. It’s a gift from him to us, and to anyone else trying to participate,” Jerry said. “He is an awesome guy and we are lucky parents.”

Visit www.halo.org to make a donation or to request assistance.

Borislow Insurance Agency Supports “Our Kids”

Each month Borislow Insurance staffers donate time and money to their communities.

Carol Conroy got so caught up in the spirit of the Cool Kids 5K last year, she brought eight colleagues to this year’s 19th annual fundraiser.

Volunteers from Borislow Insurance in Methuen, MA walked, ran or pushed wheelchairs to benefit kids at New England Pediatric Care in N. Billerica, MA. They also served up water, hot dogs and balloons and did “anything that needed to be done” on May 20th.

Carol Conroy

When Carol joined Borislow last year, she had already been providing benefits solutions to NEPC for about 14 years. Initially she was overwhelmed to learn how many fragile children needed to be cared for “but then I wanted to help.”

Over the years Carol has attended many NEPC Holiday Fairs and involved her three sons (now 21, 16 and 14) as volunteers. “It’s a great experience for a family to help others,” she said. The annual prom at NEPC was especially emotional for Carol and her husband, “because we saw how much it meant to the residents and families to take part in this rite of passage.”

Every month Borislow’s Charitable Giving Committee addresses a need in nearby communities. Projects have included filling children’s backpacks with supplies, serving meals at shelters and making monetary donations. So when Carol proposed getting involved with NEPC, Borislow employees eagerly donated their time and five luxurious raffle baskets. “People need to look outside themselves to appreciate how wonderful their own lives are, and how much more complete they will be if they do something for someone else,” Carol said.

To learn more about Borislow Insurance, visit: www.borislow.com. For information about NEPC, visit: www.nepc.org.

NEPC Kids Go For a Spin!

New England Pediatric Care periodically loads 20 residents into seven vans and takes them to Roller Kingdom in Tyngsboro, MA. It’s two solid hours of fun, says April Randlett, Director of Aquatics.

The flashing lights and loud music evoke smiles and exuberant laughter as the staff (on skates) pushes wheelchairs and gurneys around the rink. The atmosphere is magic, for some.

“There was one girl we could never get to smile, but interacting with the kids in a different place finally brought it out, April said. “This is why we call this a home.”

Why Staffers Stay In Pediatric Long Term Care?

Many individuals who work in long term pediatric care stay in their jobs for decades. Long-time staffers at three nursing homes in Massachusetts told H.A.L.O. why.

Pat

Pat Lengenza, 31 years LPN and CNA, Seven Hills Pediatric Center Groton, MA
When I got out of the army and settled in this area someone suggested I work in pediatrics. I came here expecting to work with dying children, but quickly realized they are just children who need care. After the first few years you become very invested in them. They become family and you watch them change from toddlers to teens to adults. It’s not about the medical issues, it’s about the individuals.

You need a lot of patience in this job, but it can be very rewarding. There were little girls who had no reaction, no response, when I combed their hair or made them pretty. Then one day there was a smile of recognition or eye contact. You think to yourself “There you are!” You ask yourself how can I do more for them?

The residents teach us a lot about investigative nursing. I often think about a book I read, “Johnny Get Your Gun,” about a solider whose face and arms and legs were blown away but when he felt the sun on his skin he knew what time it was and when he heard a voice he locked onto it. It’s the same thing here. You’ve got to keep showing them, touching them, communicating with the kids because you know that there is a person deep inside.

I pretend I am a detective and start at the top and work my way down looking at all the body systems to figure out what could be bothering the resident. Making sure they are as comfortable as possible is primary to me.

Most people know right away if this is for them. If you stay three years you are hooked.

This is a happy place. The people who work here feel the same way. The kids – and I will always call them kids – give so much back. I love it here.

Linda White, 26 years, Director of Education, Radius Pediatric Center Plymouth, MA
This is a very family-oriented place to work. The staff is always bringing in their own kids to meet “our” kids. We are an extended family for the residents. We’re very lucky because if you like this population there aren’t that many places to work. This place is special.

Under the Roland decision many of our young adults moved to group homes in the community. Some of our people were so attached to their patients they left to work in the group homes. The continuity of familiar staff is very important for our students and young adults.

The hardest part of our jobs is when any of the kids are ill as they are part of the “Radius family”.

Mary, Peggy, Lynn and Linda at Radius.

Brenda Sutton, 30 years, CNA and A Wing charge aide, New England Pediatric Care, Inc. N. Billerica, MA
What’s kept me here? It’s the way the kids respond, and watching them grow up.

I’d never been exposed to this population until I came here. I’m in love.

There have been many changes over the years, for instance the community comes in a lot more, and Recreation takes kids on many more field trips.

I love how they wear ear to ear smiles that day and for many days after a trip. So even if my shift is over I try to I stay late to be sure every resident is ready, because it’s a big production to bathe and dress everyone and transport them to an event. It’s so important to the kids.

Those smiles are my reward. . . .Someone has to have a heart. It’s my mission to take care of the kids.

Lynne Rossetti, 36 years at Radius, Purchasing and Distribution
I started as a pediatric nursing assistant in 1976. I was 23 years old. . . I never knew there were kids so compromised. . . After about a year I switched to the 3-11 shift where I really got to know the kids much better and met some of their families. I loved my job and the kids.

I left my job once for higher pay at a factory. I lasted three days and called the nursing home to see if I could have my job back – I missed the kids. I now work in Central Supply purchasing and distributing nursing supplies for the building. I get to see and talk to the kids and still feel I’m “taking care” of them in a different way.

Violet Marino, 27 years at NEPC, Housekeeper
Not everyone can clean. I do my job and do it well. New England Pedi is like a family, but a place is only as good as the help. 

I like to talk to the kids while I work. On a Saturday I might take “Jerry” over to classroom 8 to watch me work and listen to me talking. He watches every move, and even though he doesn’t talk he said my name once, and people heard it. 

For me that’s a good day – I made him happy – and that’s why I have stayed. I’m 85 and I don’t plan to retire – ever. My mother used to say you retire when you go to the cemetery; that’s when you rest forever.

Joan Boutwell, 26 years at NEPC, Kitchen Supervisor and Chef
The wonderful crew keeps me here and the wonderful kids. I’ve been a dietary aide and a dishwasher, we all rotate through all the jobs. I love meeting with the children in the dining room.

I’ve been feeding residents for the past 26 years. We started with 85 kids but now are, down to 15 that can eat. [Modern technology “saves” more children but they are more medically complex and many require G-tube feeding.]

We are much more culinary now and we do summer cookouts and recognition dinners.

I feel like I’m helping in my own little way.

Mary Donati, 24 years at Radius, CNA
I didn’t know such [medically complex] people existed until I came here. . . It is very interesting because there’s not a day you don’t learn things from someone.

We teach the kids about all aspects [of daily living.] It’s great when we do things like cooking projects. With switches they are able to move something, even “speak” with minimal effort. I love seeing how much the kids enjoy being involved.

I’m here a lot. Someone once said to me “work is your therapy” and I didn’t realize until then that it IS therapeutic working here. …. It keeps you reminded of the basic things that are important in life.

Karen Brassard, 35 years at Seven Hills, LPN and CNA
I started here six months out of nursing school. Mom was a nurse, and as the oldest of eight I was used to taking care of people. My first job in an elderly rest home was boring . . . but I got very attached to the kids right way. Things weren’t as acute as they are now. . . We could sign kids out with parental permission and take them home for an afternoon, or even sleep over on a weekend. That’s not allowed now, and probably not possible.

At first I worried about losing some of my skills, but as the kids became more medically complex I learned a lot attending to them. Interacting with the kids is so fulfilling – you feel they trust you.

Karen and Setseko

Shortly after I started my mother moved here to become Director of Nursing. It was a family affair: four of my sisters became CNAs and one even assumed guardianship of a resident. She visits and hand feeds him several times a week.

I also stayed because of the location, the flexible schedule and of course the people I worked with.

Setseko Gill, 36 years at Seven Hills, Retired CNA, now Teaching Assistant one day a week
I love kids and feel I was meant to take care of them. I fell in love with a 9 year old girl and have taken care of her for 29 years. At first she was very difficult but I was able to build a good relationship with her, and the continuity of care was good for her.”

We’ve seen a lot of changes here and shared our lives. . . The Director of Education who has passed away was my dear friend. When my husband became sick the management undersood and accommodated me and I was able to come back to work.

Peggy Arena, 36 years at Radius, retired Activities Coordinator, now working per diem in adult services
I chose pediatrics because I love kids. When I first came they put me on the other side (geriatrics) but I kept coming over.

It’s wonderful when kids like Jimmy and Christine spot me in a group and break out in big smiles. It makes my day. I tell people I work in the Fun Department. There is so much love here. Why would I want to work anywhere else?

Lynn Maurice, 19 years at Radius, Teaching Assistant/CAN
What keeps me here is the environment, the children, the staff, the support and the fact that you get attached to the families of the children.

Bette MacDuffee, 27 years at Radius, Activity Assistant
Working with the Pediatric population provides unique joy for all of us. While we have tried to enhance and enrich their lives, they enhance and enrich ours.

Laura Leonard, 31 years at Radius, CNA
Over the years I have helped care for many children, all with severe disabilities and all with a lot of love to share. You learn to appreciate the simple things in life by caring for children with special needs.

You work with a lot of different people and the families of the children, all with one goal in mind – to give the best care possible . . . and try to give each of them the love and happiness they deserve.

Teen Gets Off Facebook “To Help Someone Else”

 Kate Gellar and Advisor Linda White

When Katelin Gellar was in seventh grade, she chose to create a library for the medically complex children at the Radius HealthCare Center at Plymouth (MA) to earn her Silver Award as a Cadette Girl Scout. 
This past March, almost two years later, she was honored at the grand opening for her efforts.

The 15-year-old has been involved with the young people who live in the Radius Pediatric Center wing or attend the Radius Day School since she was a child. Her mother, Brenda, is Director of Marketing and Admissions and has involved her family in Radius (formerly Mayflower) activities for 18 years.

“These kids love books so much. Their faces just change so much when someone sits down and reads a book to them,” says Kate.

Linda White, Director of Education at the Day School served as Kate’s advisor and helped her identify an empty break room to transform. Radius paid for the paint and “Curious George” themed décor that Kate selected. The teen also spent her weekends and time after school planning and setting up three Scholastic book fairs. 

Kate asked for teacher selections before using the proceeds to buy books, adding some of her own favorite picture books and chapter books to the list.

Although Kate now carries a high school workload in the Culinary Arts program at Plymouth South High she has completed the project, making time to set up shelves, catalogue the inventory and prepare checkout cards, too. After requesting a donation from the Plymouth Moose Club, Kate was able to purchase bookcases from Borders Book Store when it was closing its doors. (Borders could not donate because it was in bankruptcy proceedings.)

At the grand opening, Matt Muratore, Executive Director at Radius in Plymouth, and the local Superintendent of Schools applauded Kate for her persistence, compassion and abilities. 

So why does a busy cheerleader, scout, pianist and gymnast choose to be so involved with kids in a nursing home?

“Sometimes its good to get off the computer and Facebook and help someone else. It feels better, and there’s always someone who needs more than you do,” said Kate.

Her proud mom adds: “Katelin has a passion for helping people. She also takes time to motivate younger kids. She is sticking with scouting even though many girls quit in high school. She even visits other troops to show the girls you can still be a scout and be cool.”

For her Bronze Award Kate prepared “Birthday in a Box” packages for homeless children at a South Shore shelter for abused women and children. She funded that project by baking and selling 30 cakes. After she receives her Silver Award on June 14 at the Plymouth Girl Scout Service Unit Bridging Ceremony, Kate will look ahead to her Gold Award project.

Radius Pediatric Center and Day School at Plymouth is a 62-bed skilled nursing facility for individuals with severe developmental disabilities and multiple medical challenges. Please visit them at www.radiushealthcarecenters.com.